Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

excuse my french,BUTi think going by a cd4 number to rate one's ability to workis pure bullshit to begin with!!! it now looks like they will put you on disability onlyif you can't get out of a hospital bed!

i have seen my work skills erode to the point ofhaving to change my path drasticly and my cd4 rides around 640.as i mutter to myself, must vote out every single pos incumbent in office!

why do you say distressing? the meds have greatly changed the progression of HIV to AIDS, and turning up positive is no longer the guaranteed death sentence in was pre-1995. Nowadays, someone testing positive can get onto the "newer" ARVs like Atripla and possibly deal with few if any side effects. There are plenty of stories here of people hospitalized with OIs and <100 tcells who recover within months and go on back to living as they were, just now taking a medication daily. True some might still have health problems - but are they disabling health issues? These proposed changes say they will give several yrs worth of recovery time being covered before being re-evaluated. It also says it will add more issues dealing with the long term effects as qualifiers.

This seems actually like a good story that recognizes the 30 yrs of change and improving treatment.In the beginning HIV was a death sentence.The first meds changed it to a disability.Now improved meds are changing it to a chronic illness.

why do you say distressing? the meds have greatly changed the progression of HIV to AIDS, and turning up positive is no longer the guaranteed death sentence in was pre-1995. Nowadays, someone testing positive can get onto the "newer" ARVs like Atripla and possibly deal with few if any side effects. There are plenty of stories here of people hospitalized with OIs and <100 tcells who recover within months and go on back to living as they were, just now taking a medication daily. True some might still have health problems - but are they disabling health issues? These proposed changes say they will give several yrs worth of recovery time being covered before being re-evaluated. It also says it will add more issues dealing with the long term effects as qualifiers.

This seems actually like a good story that recognizes the 30 yrs of change and improving treatment.In the beginning HIV was a death sentence.The first meds changed it to a disability.Now improved meds are changing it to a chronic illness.

i find it very distressing because you could loseyour ability to work and if your numbersdon't add up, you could be very easily sol...

If I read this correctly, the new proposed rules would require a person to have a CD4 of 50 before being able to get disability unless they had other issues mentioned?? We all know it can take up to 2 years and sometimes longer to get approved. If a person couldn't apply until they had a documented count of 50, waiting around a few years for benefits would be terrible and cruel.

I also wonder about people who would be reviewed--which is about every 3 years I believe. If you do well on meds and get above their number, then it seems the disability would be stopped. While it would be great for the improved health, I wonder what happens to someone who has been out of the job market for many years. It would be hard to get a job again after several years on disability. It would take a very good employer to not be afraid you've been out of work too long and may develop more health issues. And, just because the numbers are looking better wouldn't necessarily mean the person now feels great and ready for work again. I'm sure many would want to get back to work, but others would still be disabled regardless of the gain in CD4 counts.

the IOM authors write. "Medical advances and constant scientific progress have rendered those ideas out of date, as people infected with the virus can live longer, and more medically complicated, lives. Today, disability in HIV-infected claimants can be more precisely identified by clinical markers and specific sets of medical conditions. By updating the HIV Infection Listings to better reflect current clinical practice, SSA will be able to more accurately identify those people in need of Social Security disability benefits."

Please, someone tell me what the fuck that means.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I don't expect this to change anything for LTS. Since they include various co-factors, like side effects, or other life-limiting issues and most of us, have those in droves. If my depression isn't good enough for them, there are my heart problems, lung problems, etc. They also rely on what your doctor reports. But let's be real, even if they change the rules, it will take them years, if ever, to get to LTS and by then, we'll be just too damn old.

I don't expect this to change anything for LTS. Since they include various co-factors, like side effects, or other life-limiting issues and most of us, have those in droves. If my depression isn't good enough for them, there are my heart problems, lung problems, etc. They also rely on what your doctor reports. But let's be real, even if they change the rules, it will take them years, if ever, to get to LTS and by then, we'll be just too damn old.

Yeah , I pretty much agree . According to the article the jury is still out on wether or not they would examine those of us that already have been in the system for awhile . I remember getting a letter years ago stating that my case was not going to be reviewed again because I met the criteria as not likely to improve .

I'm not worried about losing my medical benefits as much as I am worried about the stress of being reviewed . I wonder if an infectious disease specialist reviews cases for HIV patients or could it be left to be decided by a less knowledgeable doctor .

I get a bit cranky enough when I have to go through my medical history with the young doctors in training who I have never met that pop up regularly at the university where I get my health care telling me they just read my labs and according to my numbers I'm healthy except for my lipids , they need to read back a few pages to get the full picture .

I honestly think 50 CD4 is kind of generous. I mean I have absolutely no idea how long I was under that mark before I started getting so sick I couldn't work, but I do know it wasn't long after breaking past it that I was able to begin again. A couple of months, not really worth my time to even apply for any sort of disability. More to the point I was only in a hospital for 4 days myself and I think being required to be bed ridden seems a bit extreme. There's a huge difference between being able to stand/walk and being able to work. I could walk short distances but I would be exhausted. I was sleeping constantly and at random times. I needed to recover, but I did and now I'm working.

As with any state entitlement there are people who need it and people who abuse it. The question is how good will they be at determining the difference AND will they retroactively begin removing people who they deem should no longer qualify for disability.

To account for the more recent reality that opportunistic infections can be cured or prevented by ARV treatment and prophylaxis, the potential health consequences of ARV therapy and the increasing prevalence of conditions that can occur jointly with HIV infection, IOM is now recommending to SSA that people living with HIV meet one of the following criteria to qualify for SSDI:

meet ONE of the following. Not have ALL the following.

And its encouraging that it opens the possibility of disability that is related to NEW realities of living with HIV - such as the oft discussed and feared cognitive impairment.

Finally overall isn't it good that social and government institutions keep up with the latest trends in this disease??? Won't that help to fight, for example, ignorance and stigma?

Logged

ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

While I was writing up this news story yesterday, it was apparent that a lot of specific details were missing from the IOM report. In turn, I figured it best to post a short review of the recommendations now -- with a link to a draft copy of the IOM report -- with a more detailed review to be posted to AIDSmeds sometime over the next week.

I'm reading the report (commissioned by SSA last year), for all intents and purposes, as a cost-reducing initiative. On one hand, the language suggests that IOM is instructing SSA to get more "healthy" HIV-positive people off SSDI (and Medicare) -- or prevent them from getting disability benefits in the first place -- and back into the workforce. On the other hand, they're encouraging a hefty expansion of SSA's HIV Infection Listings to include some of the more common and disabling ARV side effects and non-AIDS-related complications being documented in people living with HIV today, to help streamline the review process. The way I understand it, SSA is currently reviewing HIV-related disability claims based on medical complications and symptoms of disease that aren't clearly listed in the 1993 HIV Infection Listings, which greatly slows the review process and leads to a high number of claimant rejections (ultimately leading to even more time consuming and costly appeals processes).

Personally, I'm uncertain as to what the CD4 cell count threshold really means. In distant years past, once a person's CD4 count dropped below 200 (regardless of whether or not an opportunistic infection had been documented), SSA usually authorized an SSDI claim... no questions asked. In more recent years, however, I understand that this hasn't been the case -- SSDI is much more likely to be granted, at least the first time around, only when a serious opportunistic infection (regardless of the CD4 count) has been diagnosed.

The problem here, of course, is that the SSA appears to be relying more on its adjusters' subjective review of a person's medical history than on a standardized (and modernized) list of circumstances that occur in today's day and age of living with HIV.

Here's what's written in the report regarding the selected CD4 threshold:

Quote

The committee tried to identify a laboratory marker that could be used to make decisions about functional impairment and disability, but no direct associations were found. In the absence of such associations, the committee considered measures predictive of disease progression, morbidity, and mortality as surrogate markers of disability.

The CD4+ T-cell (also known as CD4 cells or T-cells) count is a common standard laboratory marker of disease stage for HIV/AIDS patients. The 1993 CDC AIDS definition was expanded to include a CD4 count below 200 cells/mm3 as indicative of an AIDS diagnosis. Varying CD4 levels indicate different levels of disease severity. A CD4 <50 cells/mm3 has been associated with poorer response to antiretroviral therapy, increased short-term all-cause mortality, and increased incidence of HIV-associated illnesses. Additionally, the majority of early mortalities from those with opportunistic infections occur at CD4 􀂔 50 cells/mm3. Although CD4 count is a continuous variable, CD4 <50 cells/mm3, as compared to other values, is most indicative of severe advanced immunodeficiency. It is comparable to the previous CDC AIDS definition based on opportunistic infections and cancers in its ability to indicate impairment. Although other clinical markers exist, such as HIV plasma viral load, none predict disease stage as well as CD4 count. The HIV viral load is clinically useful in monitoring the response to antiretroviral therapy and is a good predictor of the rate of CD4 decline, but it is not a direct measure of disease stage.

Although widely accepted measures of HIV functional impairments are limited, a strong relationship exists between advanced immune impairment and clinical outcomes, including mortality. The committee concludes that a threshold can be drawn at CD4 <50 cells/mm3 as an indicator of disability. Because CD4 count an change in response to antiretroviral therapy, claimants allowed disability under such a listing should be periodically reevaluated. The committee believes 3 years would allow for a sustained response and is the maximum practical period for SSA reassessment.

This is certainly a major departure from the less than 200 CD4s criteria used in years past. But again, I'm uncertain how much this criterion, alone, is used anymore.

As for the reassessment recommendations, what's unclear is the language. While the authors clearly state that the proposed revisions to the HIV Infection Listings only apply to new SSDI claimants, what the report doesn't make clear is whether current SSDI recipients -- such as long-term survivors -- will be subjected to the same "return-to-health" criteria as new claimants, though I imagine that they will. This, however, may not be such a bad thing, given that current SSDI recipients will have new HIV Infection Listings to draw from -- whereas problems like HIV-associated lipodystrophy, peripheral neuropathy and neurocognitive decline weren't included in the original HIV Infection Listings (and, thus, were only considered disabilities if the SSA adjuster subjectively considered them as such), the revised Listings will allow for more streamlined and less subjective reassessments. Whether or not the IOM report will prompt SSA to be even more rigorous in its reassessment procedures, however, remains uncertain.

Keep in mind, this is just the beginning of what will ultimately be a very long bureaucratic process. Should the SSA decide to act on these recommendations -- word has it that the agency received the report enthusiastically -- it will need to review the report internally and will then host an public comment period before enacting any changes. The proposed changes included in the IOM report won't be happening anytime soon, that's for sure.

I don't see this development as necessarily a bad thing. If people have complications due to HIV such as neuropathy, depression, etc and need to be on disability they should be. I would have qualified for disability prior to 2003, and was actually told by a ID doctor to go on disability, but I obviously didn't need it. Just because someone is HIV+ or has a certain CD4 doesn't mean they should automatically qualify. Each case should be reviewed individually.

I just hope it works out well for us LTS who are 'relatively' healthy now, but have debilitating problems relative to previous O.I.'s, etc. Can you imagine them 'yanking' our benefits at this age? I am 53...I do work part-time, but earn well under SSA's limits for people who are disabled. I can't imagine trying to work a job that would actually support me, or even trying to work 40+ hrs each week. My little 20 hr a week job is quite enough for me, and even that is hard to manage some days.

I have been 'reviewed' several times by SSA, but only as it relates to my part-time earnings, and have never been asked about any medical issues. I suppose all of us LTSers need to make sure that when we see our ID docs, we have them document IN THE RECORD all our 'ailments' and complaints (i.e. neuropathy, depression, G.I. issues, lipo, etc).

I'll take this brief opportunity to make my standard statment: "if you are working, please continue to do so if at all possible". Disability is NOT something you would want to aspire to, believe me.

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Granny60

Although I have been well below 50, I know several people that never got below 100 that never had Karposi's, or Lymphoma, or dementia or neurapathy, or had kidney failure ore ANY of the qualifying listed criteria in the report IOM recommended that are too severely impaired to work. My husband is one. He has never been below 138, but gets so fatigued he can't even speak. He might be able to mow the yard, but then is reduced to a quivering mess that can't even talk. He has had cancer that his doctor says came upon at an early age because of HIV but it is a cancer common to many. Some people are so stressed by the HIV that their body cannot handle it. And yes SS has consistantly denied him dissability just like a lot of others I know. Yes every condition can be managed by meds, but he is now taking 23 different medications to try to keep him stable with a CD4 finally above 300. Some people do fantastic, as one our friends is. After MANY bouts with pneumonia, he is finally in GREAT shape, even though he has NEVER made undetectible. Not everyone fits the same mold.

True some might still have health problems - but are they disabling health issues? Now improved meds are changing it to a chronic illness.

When I initially read this post this morning I thought, no think about it, and then I went to work, 9 hours, drove home stuck in traffic, stuck something in the oven, put my meds out, and thought I wonder what you did today? And then I decided to respond.

I have worked every day since testing positive in Feb. and then later after moving to AIDS with the exception of the first three days after being told, vacation time and after accumulating to many hours of sick time which meant take it or lose it. My highest CD4 has been 260 and who knows what it will be next

I really am amazed that you all of people said that, and maybe I should have read it a third time, but honestly I don't have the time! I'm tired and I need to work tomorrow to keep my insurance coverage, pay the bills and I guess help cover your costs. Because what did you do today? I hope your resume is up to date and your job skill aes honed based on your opinion this is only a chronic illness..

Whatever happens, I just hope they don't treat everyone the same and go case by case as others said. As we all know, someone at CD4 200 may feel great and run marathons. Many others would be ill. Even if a person's CD4 rises to 1,000, they may have lung damage from pneumonia or TB. I just hope they go case by case and not go by a certain CD4. Then there is the severe depression factor. I think some often think you can just snap out of that and is no excuse to not work. Hopefully that will still be taken into account.

On a kinda (stress kinda) related note-- I saw tonight that Social Security is very efficient. They only spend 0.9% on administrative costs. I believe they said the same is true for Medicare.

Although I have been well below 50, I know several people that never got below 100 that never had Karposi's, or Lymphoma, or dementia or neurapathy, or had kidney failure ore ANY of the qualifying listed criteria in the report IOM recommended that are too severely impaired to work. My husband is one. He has never been below 138, but gets so fatigued he can't even speak. He might be able to mow the yard, but then is reduced to a quivering mess that can't even talk. He has had cancer that his doctor says came upon at an early age because of HIV but it is a cancer common to many. Some people are so stressed by the HIV that their body cannot handle it. And yes SS has consistantly denied him dissability just like a lot of others I know. Yes every condition can be managed by meds, but he is now taking 23 different medications to try to keep him stable with a CD4 finally above 300. Some people do fantastic, as one our friends is. After MANY bouts with pneumonia, he is finally in GREAT shape, even though he has NEVER made undetectible. Not everyone fits the same mold.

One path to getting benefits would appear to directly address your husband's situation, as you laid it out above:"RECOMMENDATION 4. Comorbidities induced by HIV infection or adverse effects of treatment should be considered disabling if they markedly limit functioning in one or more of the following areas: ability to perform activities of daily living; maintenance of social functioning; or completion of tasks in a timely manner due to deficiencies in concentration, persistence, or pace. ..."

(emphasis added)

Change is always worrisome, but I think the process being used here is a good one.

We've heard on the forums that the existing disability criteria are being applied in an inconsistent way across the country; when you look at the current criteria it is easy to see why -- they don't really reflect the current state of medicine. The Institute of Medicine is a careful and thoughful group -- it is established under the auspices of the national academy of sciences. Typically it will have a panel that includes experts in the field as well as respected senior scientists/doctors. The current panel listing appears to live up to that expectation. There can be politics involved in national academy projects (there's politics in all aspects of life), but they don't do hatchet jobs.

To me the most troubling aspect of this is that we are hearing about it after the report has been finished. Usually these reports are open to input from a variety of sources. This one was as well. At the "workshops" (national academy speak for "hearings") there was input from Lambda legal and a client of the Whitman-Walker clinic. But I found it odd that NAPWA was not represented (and I don't think has put anything out about this).

According to a new report issued by the Institute of Medicine, the guidelines used by the Social Security Administration to determine whether someone with HIV qualifies for disability benefits should be updated to reflect advances in treatment.

The report recommends new criteria for determining whether an HIV-positive individual qualifies for disability benefits. The new guidelines also suggest reevaluation of disability status for most people with HIV every three years.

If adopted by the Social Security Administration (SSA), the guidelines would apply only to new applications; they would not be applied retroactively to people with HIV who are already receiving disability benefits. (this wasn't clear in Tim Horn's initial write up on Poz.com)

To determine if someone is eligible to receive disability, SSA consults its lists of health conditions, called Listings of Impairments. Individuals who are not working and who have a medical condition included in the Listings are usually considered disabled by SSA, and they can be approved for benefits more quickly and in fewer steps.

The HIV Infection Listings, created in 1993, are the guidelines used to determine whether people with HIV are considered disabled and eligible for disability benefits. At the time they were created, people infected with HIV usually died within a few years due to AIDS-related illnesses.Since then, the introduction of highly active antiretroviral therapy (HAART) has transformed HIV from a fatal disease into a potentially chronic, manageable condition. As a result, SSA requested that the Institute of Medicine recommend new criteria for establishing whether or not a person with HIV is considered disabled.

Under the current guidelines, a person with HIV must have a confirmed HIV-positive diagnosis and an illness that indicates their immune system has been compromised in order to be considered a disabled person.

These illnesses include opportunistic infections (infections that do not usually develop in individuals with healthy immune systems) and AIDS-defining cancers. The Listings contain a list of recognized AIDS-related opportunistic infections and cancers.

With the new recommendations, an applicant would be eligible for benefits if he or she has one of the following conditions:

ē A CD4 (white blood cell) count at or below 50 cells per microliter of blood, a threshold that indicates an advanced stage of illness

ē One of a few rare but fatal or severely disabling HIV-associated conditions, such as dementia or certain types of AIDS-related cancers. The committee advises that benefits for these diseases should be permanent.

ē An HIV-associated condition, such as heart disease or hepatitis, that is already covered by another section of SSAís full Listing of Impairments

ē An HIV-associated condition, such as wasting syndrome, that is not already included

in another section but that significantly impairs a personís ability to function.Recommended criteria are slightly different for children, with CD4 count thresholds of 500 cells per microliter or less for children less than 1 year of age; 200 cells per microliter or less for children aged 2 to 5 years; and 50 cells per microliter or less for children older than 5 years.The report also suggests that SSA reevaluate the disability status of patients granted assistance every three years, since HAART and other treatments can lead to improvements in health and ability to function over time.

Currently, the HIV Infection Listings allow claimants to receive permanent benefits and do not require periodic reevaluations of health status.

Finally, the committee recommended that SSA rewrite the introductory text that explains how to interpret and use the HIV Infection Listings. The report states that the current introduction is confusing and difficult to read and advises SSA to reorganize and simplify the text.

For more information, please see the full report by the Institute of Medicine.

If adopted by the Social Security Administration (SSA), the guidelines would apply only to new applications; they would not be applied retroactively to people with HIV who are already receiving disability benefits. (this wasn't clear in Tim Horn's initial write up on Poz.com)

This definitely seems to be the case. Unfortunately, the actual language in the IOM report regarding who will be affected by the proposed changes is incredibly vague. This is pretty much the only statement in the report to draw conclusions from:

Quote

SSDI and SSI provide financial assistance to people whose disabilities are lasting and severe enough to prevent them from working or carrying out the routine tasks of daily life. More than 12 million people received Social Security disability benefits in 2008, and SSA is expected to process more than 3.3 million new applications in fiscal year 2010. The Listing of Impairments (the Listings) consists of lists of physical and mental health conditions categorized by body systems and serves an administrative tool designed to speed the application review process. Individuals with a medical diagnosis of a condition included in the Listings can be approved for benefits in fewer steps. Revisions to the Listings affect new claimants only and are not applied retroactively. [Emphasis added.]

I've been in touch with a few IOM committee members who stress that the new recommendations apply only to new claimants -- those currently receiving SSDI or SSI (and, with them, Medicaid, Medicare, housing assistance, etc.) will not be affected. Of concern, however, is the fact that the language in the report is so vague and may be interpreted differently by SSA. Fortunately, once SSA takes up the recommendations, it will host a public comment period before enacting any such changes.

I'm just thinking that it will be hard for SSA to take up both recommendations: only apply the revised HIV Infection Listings to new claimants while also stepping up efforts to recertify/reassess long-time SSDI/SSI claimants once the current Listing is effectively voided and new disability criteria are put into place. Even if it's possible through some sort of grandfathering designation, SSA will effectively be working with a two-tier system going forward.

It will be interesting to see how these recommendations, in particular, are interpreted by SSA when the time comes.

It's just that for someone that's been on SSDI for + 10 years has, effectively now, no resume and can't explain that away with "Oh, I has acute HIV infection for those years" -- and in a recession much less. Nobody would ever hire them, nut just do to the stigma issue but nobody would want such a person on their healthcare policy for obvious reasons. Once you are on SSDI for that length of time you are, for all intents and purposes completely unemployable.

Void of this retroactive information I would add that this recent posting caused many undo anxiety, the end effect is it would just shift such patients from SSDI/Medicare onto welfare and Medicaid and serve little purpose, further making such people more destitute than they already are -- don't you think?

Oh, I totally agree... You raise a key point that isn't discussed in the IOM report and will need to be heard by SSA.

Another serious aspect of this is that IOM didn't even consider the fact that SSDI and SSI certification is so closely tied to access to Medicare and Medicaid. Even if those currently receiving SSDI and SSI are exempt, entirely, from the recommended changes, this is going to seriously alter how people currently access the care and treatment they need. I mean, ADAP is already past the tipping point and its entirely unclear what the future holds for the health care reform legislation that passed earlier this year. If the goal is to get people tested for HIV and into care ASAP, restricting access to Medicare and Medicaid in light of current economic realities isn't exactly going to help achieve this basic goal of public health.

I guess the important thing here is for everyone -- especially those currently receiving SSDI and SSI benefits -- to keep their ear to the ground and participate in the public comment period once it is announced by SSA.

I apologize if the original article, and whatever additional comments in this thread, caused many undue anxiety. That said, I do see this is a major community advocacy issue. Not only do I think the IOM recommendations require further clarification, but this is really just the beginning of what will likely be an enormous bureaucratic undertaking that will require community input.

Oh, I totally agree... You raise a key point that isn't discussed in the IOM report and will need to be heard by SSA.

Another serious aspect of this is that IOM didn't even consider the fact that SSDI and SSI certification is so closely tied to access to Medicare and Medicaid. Even if those currently receiving SSDI and SSI are exempt, entirely, from the recommended changes, this is going to seriously alter how people currently access the care and treatment they need. I mean, ADAP is already past the tipping point and its entirely unclear what the future holds for the health care reform legislation that passed earlier this year. If the goal is to get people tested for HIV and into care ASAP, restricting access to Medicare and Medicaid in light of current economic realities isn't exactly going to help achieve this basic goal of public health.

I guess the important thing here is for everyone -- especially those currently receiving SSDI and SSI benefits -- to keep their ear to the ground and participate in the public comment period once it is announced by SSA.

I apologize if the original article, and whatever additional comments in this thread, caused many undue anxiety. That said, I do see this is a major community advocacy issue. Not only do I think the IOM recommendations require further clarification, but this is really just the beginning of what will likely be an enormous bureaucratic undertaking that will require community input.

Nobody's benefits are going away tomorrow, that's for sure.

Tim

From what I'm reading on the pozhealth yahoo group it seems such concerns may be unfounded -- can't recall the working they're quoting but there definitely seems to be some "grandfather" clause in there. Anyway, if not they'd just be shunting off folks to welfare and Medicaid, so that would just a shell game and counter-productive in the end.

I honestly thing that this is just streamlining the process (nationally) for new applicants, and that's surely been needed for almost a decade.

Of course, I could be wrong about all of this And yes Tim Horn, last week you caused me undue anxiety and insomnia and I will be paying you back in spades when I run into you at Paradise Club

Yes, drinks are on me the next time you're down the shore and find yourself at Paradise.

Anyway, I spoke with Paul Volberding, lead author of the recommendations, last night. Here's what he said:

"The protection of those with existing disability is a solid part of SSA, although anxiety is appreciated. SSA was clear, however, that revisions are not allowed to withdraw existing benefits. That said, the community advocates should be engaged in this process -- more than they seem to have been in this recently? -- as the IOM recommendations are only the start of a discussion, not the end by any means."

I'll be editing the original news article today to reflect this important clarification.

Volberding also noted that future SSDI/SSI applicants will likely have an easier time accessing disability support using the new criteria, given that it won't depend solely on the development of an OI, but rather on a handful of serious OIs, a number of non-AIDS-related complications and certain disability-inducing adverse events of antiretroviral therapy. What's more, whereas it's been years since SSA used a person's CD4 count alone to qualify applicants for disability, the IOM recommendation is urging SSA to consider a CD4 count below 50 (along with evidence of disability) as a stand-alone criterion.

Ive worked the whole time since being diagnosed hiv+... for over 19 years soon to be 20...my cd4's were at one time below 100... and here I am with over 1700cd4's today... the whole time I was a guinea pig for the merc study I was working... then I worked with diareah for 3 years? What a pleasure that was? I never went on SSI SSDI etc... because, I enjoyed working... it gave me a reason to live... I also felt like hell for a good part during my experimental days of treatment... but, I can see Why some people had to go on disability... but, I'm thankful I did not... now my bones ache all the time... and I feel bloated with my visceral belly I'm trying to loose... but, other than that I'm thankful I'm still alive? and soon to be 50... but, to get compliments I tell people I'm 60! lol

that's great dixieman, but though I'm currently on SSDi I also worked from the age of 14-16 (off the books) then on the books until I was 37, so that's more years than you actually: 23, and 20 of those was with a high-ish income making my SS/Medicare contributions considerable.

But whatever, after multiple OIs and having a detectable viral load for EIGHTEEN years (imagine what that does to fatigue) and viral replication throughout my digestive tract that whatever I could muster to eat with a depressed appetite came out as liquid, it was rather hard to work 55 hour work weeks, in a very demanding job where I wasn't just a grunt but the CFO of an architectural design firm in Manhattan.

Once I was missing too much time to go to an endless stream of specialists and could no longer sneak off during lunch hours when it was just for lab work, I had to disclose to my employers about my health status, and within 8 months I was magically laid off. It was a small firm with less than 20 employees so, though they'd never ever voice the fact, they must have seen me as a major drain and reason that their health insurance premiums had skyrocketed over the past decade. This was during the "dot-com" recession in 2001 and they'd laid off a couple of other people, so I had no grounds really to claim that they were discriminating against me. Unfortunately this is just life for many of us with HIV.

To make matters worse two months after I was laid off 9/11 happened and NOBODY in NYC was doing any interviews for at least six months -- I finally landed a job off the books, using COBRA that was about to run out from my previous job (but I did have ADAP which I'd never used previously) only to quickly learn that my new employer, who was gay, was psychotic and had a nasty meth habit which made it impossible for me to do my new job. So I quit and filed for SSDI -- fortunately I was in the midst of a major bout of HIV wasting which was all fully documented, along with my high viral load showing my HAART wasn't at all working, plus fully documented depression and anxiety so I was immediately approved and never had to deal with any appeals of any sort -- in fact since my 2nd job was off the books SSA looked at my first job's lay off as the beginning of my disability claim so I was able to have it done retroactively, at least by 12 months. I only had to wait then one year, not two, to be covered on Medicare and in the interim since I lived in NYC (thank goodness) they had a program to pay for a private insurance policy to cover doctors visits and lab work until I got on Medicare.

Also, since I could still document with lab work copies dating from 1993 that I was initially diagnosed with AIDS <200 cd4 I immediately qualified for rent assistance until my SSDI payments began, which was about six months. I also was forced to use food stamps.

So overall, if any of you think that was an enjoyable experience to go through with my other HIV issues you need to check yourself -- it was absolutely dreadful and I'm thankful that I've never been the type to contemplate suicide. I persevered though all of that (with no family support because until a year after my SSDI was approved I didn't even tell my parents about all of this) pretty much on my own, with only the moral support of my close group of friends and the assistance of staff at ASO's like GMHC and Friends in Deed.

I don't talk about this much in detail because looking back over this period of several years isn't at all pleasurable. So now I find myself at the age of 45, and the rest I've had from being on SSDI has allowed me to regroup, going on meds like Fuzeon and other clinical trials to the point where my lab numbers are higher than 99% of the rest of you. But you know what -- I worked for all of that and totally consider myself a survivor. But like anything as I age I fully expect like a Sword of Damocles to start getting hit with all of the ailments that are starting to show up in LTS folks. As it is I can barely walk 30 minutes without my feet feeling on fire, and though I'm getting Sculptra in my face, diagnosed with Grade 3 lipo, that does nothing to solve the lipo in the rest of my body, and frankly if you think my face is bad try living with no ass (and I don't mean sex, I just mean being able to sit properly without putting strain on your spinal cord). I even have massive callouses on my elbows from when I rest them on any chair with arm rests... I could go on -- it's lots of little things that add up over time.

Oh, and how can I take 12 mg of immodium daily plus six Pancrecarb and STILL get explosive diarrhea a mere six hours after eating food which I cooked at him and is completely fresh?

Sorry, I know this is very tl;dr and I don't usually do that but I just had to vent.

Ms. P -Vent vent vent - venting like that is sometimes needed, as are the details, to show us newbies (yes, I am a newbie at only 2 years positive) the challenges that have been faced and overcome by so many long term survivors.

You said it real, you didn't sugar coat it and that is what made it carry all the more weight.

Thanks for sharing what I know (and you said) could not have been a pleasurable experience. But, you made it through - for that I'm grateful.

Thank you Miss P . for sharing your story . So many people including some living with HIV have no way of knowing what its like or what reason's led people to apply for disability unless we tell and yes , sometime vent .

For me in the beginning it was pneumonia and a canceled insurance policy that led me to disability . If not for medicare I would be dead .

that's great dixieman, but though I'm currently on SSDi I also worked from the age of 14 (off the books) until I was 37, so that's more years than you actually: 23

But whatever, after multiple OIs and having a detectable viral load for EIGHTEEN years (imagine what that does to fatigue) and viral replication throughout my digestive tract that whatever I could muster to eat with a depressed appetite came out as liquid, it was rather hard to work 55 hour work weeks, in a very demanding job where I wasn't just a grunt but the CFO of an architectural design firm in Manhattan.

Once I was missing too much time to go to an endless stream of specialists and could no longer sneak off during lunch hours when it was just for lab work, I had to disclose to my employers about my health status, and within 8 months I was magically laid off. It was a small firm with less than 20 employees so, though they'd never ever voice the fact, they must have seen me as a major drain and reason that their health insurance premiums had skyrocketed over the past decade. This was during the "dot-com" recession in 2001 and they'd laid off a couple of other people, so I had no grounds really to claim that they were discriminating against me. Unfortunately this is just life for many of us with HIV.

To make matters worse two months after I was laid off 9/11 happened and NOBODY in NYC was doing any interviews for at least six months -- I finally landed a job off the books, using COBRA that was about to run out from my previous job (but I did have ADAP which I'd never used previously) only to quickly learn that my new employer, who was gay, was psychotic and had a nasty meth habit which made it impossible for me to do my new job. So I quit and filed for SSDI -- fortunately I was in the midst of a major bout of HIV wasting which was all fully documented, along with my high viral load showing my HAART wasn't at all working, plus fully documented depression and anxiety so I was immediately approved and never had to deal with any appeals of any sort -- in fact since my 2nd job was off the books SSA looked at my first job's lay off as the beginning of my disability claim so I was able to have it done retroactively, at least by 12 months. I only had to wait then one year, not two, to be covered on Medicare and in the interim since I lived in NYC (thank goodness) they had a program to pay for a private insurance policy to cover doctors visits and lab work until I got on Medicare.

Also, since I could still document with lab work copies dating from 1993 that I was initially diagnosed with AIDS <200 cd4 I immediately qualified for rent assistance until my SSDI payments began, which was about six months. I also was forced to use food stamps.

So overall, if any of you think that was an enjoyable experience to go through with my other HIV issues you need to check yourself -- it was absolutely dreadful and I'm thankful that I've never been the type to contemplate suicide. I persevered though all of that (with no family support because until a year after my SSDI was approved I didn't even tell my parents about all of this) pretty much on my own, with only the moral support of my close group of friends and the assistance of staff at ASO's like GMHC and Friends in Deed.

I don't talk about this much in detail because looking back over this period of several years isn't at all pleasurable. So now I find myself at the age of 45, and the rest I've had from being on SSDI has allowed me to regroup, going on meds like Fuzeon and other clinical trials to the point where my lab numbers are higher than 99% of the rest of you. But you know what -- I worked for all of that and totally consider myself a survivor. But like anything as I age I fully expect like a Sword of Damocles to start getting hit with all of the ailments that are starting to show up in LTS folks. As it is I can barely walk 30 minutes without my feet feeling on fire, and though I'm getting Sculptra in my face, diagnosed with Grade 3 lipo, that does nothing to solve the lipo in the rest of my body, and frankly if you think my face is bad try living with no ass (and I don't mean sex, I just mean being able to sit properly without putting strain on your spinal cord). I even have massive callouses on my elbows from when I rest them on any chair with arm rests... I could go on -- it's lots of little things that add up over time.

Oh, and how can I take 12 mg of immodium daily plus six Pancrecarb and STILL get explosive diarrhea a mere six hours after eating food which I cooked at him and is completely fresh?

Sorry, I know this is very tl;dr and I don't usually do that but I just had to vent.

I applied for ssdi back in Feb 2010. I had a cd4 84 and viral load of 140,000. Diagnosed with Hiv Dementia, Encephalopthy, Herpes simplex, 2 tongue lesions removed, Thank the list can go on. But I finaly got a response from the SSA saying that I was denied due to the fact that I would improve. Lost my car due to reposession, Filed for bankruptcy(waitting for my discharde letter) had to quit my job after running out of my TDI and now am on state aid and food stamps. Thank's to my partner(negative) of 30 years we have been able to get by. I'm part of the V.A. so getting my meds thru them and hospital. Seeing a great I.D. doctor at the hospital. I appealed the denial and going to play the waitting game again. I was diagnosed back in Jan 2010. So far my cd4 count is up to 204 and viral load <45. I don't see any improvement as far as my memory goes. I'm still exhausted after my morning caffiene fix wears off, my body aches . Although I'm not falling down as much! Just waitting for another denial so I find a lawyer to help get my disabilty from ssdi. Been working for 33 years and paying into the system and can't really understand WHY a denial. I'm not trying get around the system just want to get something from

Miss P - with Daddy Tim gone the rest of us LTS folks have to speak up, or else we will be forgotten, dismissed, or worse, derided.

You might not have an ass to speak of, but that post shows you have the balls of a giant.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Miss P....thanks for sharing that story. You've been through the mill. I bitch and moan about fatigue and diarrhea and such but have never had to go through anything like what you describe. Like JG said- you made it through!

JOHN G. BARTLETT, Professor of Medicine, Division of Infectious Diseases at the Johns HopkinsUniversity School of Medicine, Baltimore, Maryland

CARLOS DEL RIO, Professor and Chair, Hubert Department of Global Health at the Rollins School ofPublic Health and Professor of Medicine, Division of Infectious Diseases at the Emory UniversitySchool of Medicine Atlanta, Georgia

Miss P - with Daddy Tim gone the rest of us LTS folks have to speak up, or else we will be forgotten, dismissed, or worse, derided.

So true, dear man. A very good posting, Miss P, and very eloquently stated.

Thankfully, I am able to repress or 'block out' a lot of memories of the horrible times of the late 80's and most of the 90's. (not sure if this is a coping mechanism, or HIV-related memory loss, or just plain old "Oldtimers CRS"). Just because some of us are able to function today thanks to the medications we now have, certainly doesn't mean we are fine and dandy. The lingering effects of YEARS of low (to non-existent) CD4's and sky high viral loads, plus debilitating O.I.s have left many of us rather frail, as compared to a normal person our age who is HIV-negative.

We're still all on the same 'journey' with HIV/AIDS. We've just been at it longer (and in a much older vehicle!)

Hugs, Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

BobF

Hi Tim. I still wasn't clear on the clarification you got regarding those of us currently getting SSDI. I understand that the new guidelines wouldn't cause our SSDI to be immediately stopped if we didn't meet the new guidelines now, but wasnt sure if the new guidelines would apply at the time of our re-assessments? That is, would the current permanent AIDS/HIV allowance still apply for current SSDI recipients or would we be subjected to re-assessment using the new guidelines?

I was approved for SSDI in 1994, and have never been reviewed since. It is my understanding that those who choose to work part time (within the guidelines of eligibility) are prone to getting reviewed. I have frankly been surprised that I have never been reviewed, but it isn't like I am going to write a letter and ask.

I am hoping that this "grandfathering" comes into effect, because as soon as I lose my medicare and my housing subsidy, I lose my meds and what remains of my life as i know it. We simply do not have a system in place to transition people back into work with any success. The "Ticket To Work" program is a joke, and I would likely last three months as a waiter.

These are real concerns for those currently in the system, and they are also a clear warning for people contemplating disability at this point. I am grateful that Tim Horn has taken the time to bring this subject to our attention, and to clarify these issues.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

According to Volberding, people currently receiving SSDI or SSI due to disability will never face the same reclassification/recertification process being proposed here, which is only intended for new SSA disability claimants (if and when the Listings are updated). By the sound of it, SSA has no interest in revoking SSDI or SSI for anyone currently receiving these benefits. The agency is only interested in changing the approval and recertification processes for for new claimants, after the current qualification process is overhauled.

Currently, some people receiving SSDI or SSI are asked to certify to an SSA adjuster, from time to time, that they're not making any more money through employment than is allowed by SSA. That's pretty much it. For everyone granted SSDI or SSI via the approval process that's pretty much been in place since 1993, disability will essentially remain permanent.

Of course, this is always subject to change, but not as a result of the IOM report being discussed here. This is why, I think, it's important for SSA to hear from as many people as possible, once the agency announces its public comment period (next year, most likely) with respect to these recommendations. There's absolutely no harm in reiterating the importance of disability benefits, even if you're not at risk of losing them in response to this committee's report. SSA needs to hear this -- I guarantee it, they're going to be hearing from people who think that ALL people living with HIV receiving disability benefits who are physically capable of working should be dropped and forced back into employment -- and, once the public comment period is announced, there will be no better opportunity to speak up.

And to be brutally frank, it is imperative that we DO speak up, and not assume that a select few will do so, because they always have.

Many if not most of our staunches defenders are too sick to do it anymore, or are dead. If we do not speak up, we must assume no one will.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Actually as far as reviews go it depends on how they set your "file" up to begin with -- I technically am reviewed every three years, but in practice it's happened every four years though part of that might have been due to moving from NYC to Philadelphia. I was reviewed in 2005 and 2009 -- the first time the form was longer, the second time it was very short. Without digging my copies out they're basically just perfunctory reviews that validate that you are taking daily medications and seeing a doctor in a frequent manner. From what I've been told, and someone that used to post here verified this (I forget the person's screen name, but he knows the HIV issue from a legal angle) HIV is seen by SSA as "uncurable" so technically they can't take you off disability as long as it's not cured. I suppose theoretically the only way they'd take someone off is if that super-duper magic cure potion appears that we're always reading about in our infamous Research News forum section.

But yes, most people I know on SSDI are never reviewed. I'm not sure why my file was set up like it is -- I neglected to mention that during my initial application they actually made an appointment with a SSA doctor to look me over, but at the last minute the man handling my case called and cancelled that and said he was just going ahead and approving me.

The first time I received the "review" letter and forms it caused me a lot of anxiety, but my case manager calmed me down and actually filled the forms out for me, as he knew how to handle it. He also told me to walk the forms over to the SSA offices (they're just a few blocks from my clinic) and hand them over in person so they can't say they were late, as you only have 30 days to turn the forms around. So for my second review I just pulled out the copies of my first review and answered the questions in the same manner, though it was a totally different form and much easier to complete. I turned it around quickly and just mailed it in and didn't really worry much about it.

I wish I could remember the guy here who knows a bit about this issue -- I think he may have gone to one of the older AMGs and lives in California, San Francisco perhaps and works as a lawyer, or once worked as a lawyer and is now on SSDI. I hope that this may jog someone's memory of his name and we can PM him and let him offer some relevant commentary.

I wish I could remember the guy here who knows a bit about this issue -- I think he may have gone to one of the older AMGs and lives in California, San Francisco perhaps and works as a lawyer, or once worked as a lawyer and is now on SSDI. I hope that this may jog someone's memory of his name and we can PM him and let him offer some relevant commentary.

Was it Sonomabeach, who now goes by Choofnhurl? He always had a number of insightful things to contributed regarding disability benefits, etc. I know he's still active in the Forums, albeit not to the same degree he once was.

Was it Sonomabeach, who now goes by Choofnhurl? He always had a number of insightful things to contributed regarding disability benefits, etc. I know he's still active in the Forums, albeit not to the same degree he once was.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

As far as I know of I've never been reviewed by SSA, and I've been on SSDI since 98, I was however told by a Doctor (back in Northern Cal) at that time that I really shouldn't worry about this as I have AIDS, and if I didn't I would not be on SSDI, also AIDS does not go away, you might get better and feel well from time to time, but, without the life saving Meds, you will most likely get very sick w/ a whole host of OIs and die, I was also told this by my current ID-Doctor here in New Mexico, she also informed me that, I wouldn't go back to work if I were you, you will risk getting very sick, and risk your benefits, you have AIDS plain & simple, and it's not ever going away, and you've had this longer than you might think, right now I'm treating all of the other underlines problems that were caused by years of Meds, and you have a lot more other things to worry aboutlike Organ failure, aging as well as having AIDS......

« Last Edit: October 01, 2010, 10:47:00 AM by denb45 »

Logged

"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Maybe this should be a sticky of some sort Tim Horn what do you think?

What about creating a new Forum -- calling it, perhaps, "Social Security, Disability and Access to Care" -- where we can post an intro message listing key documents (the SSA Listings, non-profit disability claim assistance, ADAP phone numbers, a link to the IOM report, etc.) and create a new space for the many existing (and future) questions and thoughts pertaining to benefits and access to care?

Just an idea.

We can move this particular thread there, as it's original purpose was to seek clarification regarding an article posted to AIDSmeds, while at the same time providing the space for additional questions and comments that seem to be stemming off this particular thread. I can also go through some of the older threads posted the Forums focusing on, say, SSDI/SSI issues and move them to the new forum.

If anyone is particularly OPPOSED to this idea.. or would like to work with me on setting up an authoritative list of go-to resources... and have ideas about what, in fact, the new forum should focus on (and be called), please let me know.

SSDI/SSI and issues like access to care have always been hot topics in these Forums and, unfortunately, they all too often get lost in the catch-all of "Living With HIV."

I really, REALLY like that idea. Many people will emerge from RECENTLY INFECTED and merge into LIVING WITH and never need those services. Much as I shudder at fragmentation (full disclosure: change of any sort) I think a devoted forum for this issue is important.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."